Can Digital Health Improve Quality-of-Life at End-of-Life?

The IOM says patients aren't spending their final days the way they want to. Digital health offers a plethora of solutions to make end-of-life care better.

End of life in America. It’s a hot topic these days. Recently, the Institute of Medicine (IOM) released an important new report: Dying in America, Improving Quality and Honoring Individual Preferences Near the End of Life. Basically, it said that many Americans are not spending their final days the way they want to—receiving aggressive care they really don’t want in acute care settings that don’t support their end-of-life goals.

That came on the heels of a new round of discussions about reimbursing physicians for having advanced care planning discussions with their patients and the American Medical Association’s (AMA) submission of billing codes to Medicare to make it happen. In the case of many private insurers, and some state Medicaid systems, that’s already taking place.

My Two Cents

I’ve been a nurse for 30 years, and spent the last 15 in hospice. That CHPN behind my name means I’m a Certified Hospice and Palliative Nurse. I have a lot to say, but both of these issues are bigger than this post can afford.

But—please indulge me for a moment while I venture a toe onto my soapbox.

It breaks my heart that such critical conversations must be incentivized by a billing code—a stark reminder of how broken our American healthcare system is.

I know time is a precious commodity and many are uncomfortable talking about end-of-life issues—but patients and families need the healthcare profession as a whole to find the time, swallow their collective fears, and lead these essential discussions. If more support is needed, plenty is available.

Sadly, as reimburse begins to flow, there will undoubtedly be an inexplicable onslaught of courage and newfound knowledge about how to talk about end-of-life care in exam rooms and beside hospital beds across the country.

Well, whatever it takes.

As long as patients get the information they need to empower them in getting the type of care they truly want. Unfortunately, the IOM study found that’s not the case.

Instead of bludgeoning this topic with my born-of-experience perspectives, I’d rather take this opportunity to integrate my love for digital health with my love for hospice and palliative care. After all, hospice is where I cut my digital health teeth in the first place.

The IOM Report

The IOM provides a wonderful summary of the report’s key findings and recommendations. I’d love to include them all, but you’d be better off diving into the detail on your own. However, there are several that highlight the role of digital health to enhance the end-of-life experience—both for Americans, and others around the world. I’ve selected those that specifically relate to our ability to do that.

Continuity of Care

“People nearing the end of life often experience multiple transitions between health care settings—including high rates of apparently preventable hospitalizations—which can fragment the delivery of care and create burdens for patients and families.”

Thus, the need for an interoperable EHR and other digital health systems—like mHealth and telemedicine—which help to enhance communications between providers and improve continuity of care.

Caregiver Support

“Demand for family caregiving is increasing, and the types of tasks performed by family caregivers are expanding from personal care and household tasks to include medical and nursing tasks, such as medication management.”

I’ve seen many overwhelmed family caregivers in the homes of my hospice patients. Here, digital health can offer a wealth of solutions to support medical and nursing tasks that family caregivers assume—such as medication management and telehealth support from a healthcare team. Family caregivers can also become quite isolated, and online communities that provide support through social media or other sources can be a big help.

Advance Care Planning

“Most people nearing the end of life are not physically, mentally, or cognitively able to make their own decisions about care. The majority of these patients will receive acute hospital care from physicians who do not know them. Therefore, advance care planning is essential to ensure that patients receive care reflecting their values, goals, and preferences.”

I have a Living Will, and a number of other advance directives—including the designation of a trusted health care surrogate who could make my decisions if I couldn’t. This is advance care planning at its finest, when individuals provide guidance for future decisions while they are still well and able to do it.

I worked in critical care for 12 years before hospice—and witnessed the results of unexpected events each day that I walked into the unit. Here, digital health can help support patient autonomy by ensuring that their previously documented guidance for care follows them wherever they go through interoperable systems.

Palliative Care Training

“Incentives, quality standards, and system support are needed to promote improved clinician communication skills and more frequent and productive clinician-patient conversations.”

It’s certainly true that many clinicians don’t feel comfortable having these conversations, and the report notes that both medical and nursing curricula, as well as ongoing licensure requirements should integrate more palliative care training. As with other knowledge applications, digital health can provide ready-access to standards, guidelines, and even apps to help guide clinicians through these tough discussions.

Patient and Family Education

“Need for public education and engagement about end-of-life care issues is manifest at the societal, community/family, and individual levels. Not only do most Americans lack knowledge about end-of-life care choices, but the health community and other leaders also have not fully utilized strategies to make that knowledge available, meaningful, and relevant across diverse population groups.”

This is patient education at its best. And digital health is certainly able to provide online patient portals and mHealth platforms to support providers in making this essential information available to their patients and families. 

Accessible Comprehensive Care

“Government health insurers and care delivery programs, as well as private health insurers, should cover the provision of comprehensive care for individuals with advanced serious illness who are nearing the end of life. Comprehensive care should:

be seamless, high-quality, integrated, patient-centered, family-oriented, and consistently accessible around the clock…

be competently delivered by professionals with appropriate expertise and training;

include coordinated, efficient, and interoperable information transfer across all providers and all settings…"

Although an in-person presence is certainly required in many instances, telehealth can be a perfect digital health offering to help meet many of these needs. With the momentum in the telemedicine industry over the past year, we’ll hopefully see more of this taking place. And certainly, interoperable systems need to be in place to make comprehensive care possible.

Virtual Care Access

“Palliative care should encompass access to an interdisciplinary palliative care team, including board-certified hospice and palliative medicine physicians, nurses, social workers, and chaplains, together with other health professionals as needed (including geriatricians). Depending on local resources, access to this team may be on site, via virtual consultation, or by transfer to a setting with these resources and this expertise…”

That sure sounds like telepalliative care or telehospice  to me—the same type of telemedicine application that many other medical specialties partake in—such as teledermatology, telecardiology, teleICU, telestroke…need I say more?

Interoperable EHR

Regarding the integration of the financing of care with the provision of quality care, action should: “require the use of interoperable electronic health records that incorporate advance care planning to improve communication of individuals’ wishes across time, settings and providers, documenting (1) the designation of a surrogate/decision maker, (2) patient values and beliefs and goals for care, (3) the presence of an advance directive, and (4) the presence of medical order for life-sustaining treatment for appropriate populations;…”

Well, if that doesn’t support the need for an interoperable EHR, I don’t know what does.

Public Education and Engagement

And then there’s a great set of recommendations about public education and engagement, which includes the fact that a variety of organizations and agencies should:

“…use appropriate media and other channels to reach their audiences, including underserved populations.”

Which is exactly how digital health uses mHealth and social media to reach those in remote areas.

This is just a brief overview of the low-hanging fruit that Digital Health can pick to improve care at end-of-life. There are many more findings and recommendations in the report that could be supported by the tremendous variety of digital health applications available.